J Cancer Surviv DOI 10.1007/s11764-014-0397-8
Facilitating survivorship program development for health care providers and administrators Marcia Grant & Denice Economou & Betty Ferrell & Gwen Uman
Received: 22 July 2014 / Accepted: 22 August 2014 # Springer Science+Business Media New York 2014
Abstract Purpose This manuscript will describe institutional changes observed through goal analysis that occurred following a multidisciplinary education project, aimed at preparing health care professionals to meet the needs of the growing numbers of cancer survivors. Method Postcourse evaluations consisted of quantitative questionnaires and follow-up on three goals created by each participating team, during the 3-day educational program. Evaluations were performed 6, 12, and 18 months postcourse for percent of goal achievement. Goals were a priori coded based on the Institute of Medicine’s survivorship care components along with two additional codes related to program development and education. Results Two hundred and four teams participated over the four yearly courses. A total of 51.6 % of goals were related to program development, 21 % to survivorship care interventions, 20.9 % on educational goals, and only 4.7 % related to coordination of care, 1.4 % on surveillance, and 0.4 % related to prevention-focused goals. Quantitative measures postcourse showed significant changes in comfort and effectiveness in survivorship care in the participating institutions. Conclusion During the period 2006–2009, health care institutions focused on developing survivorship care programs and educating staff, in an effort to prepare colleagues to provide and coordinate survivorship care, in cancer settings across the country. Implications for cancer survivors Goal-directed education provided insight into survivorship activities occurring across M. Grant (*) : D. Economou : B. Ferrell Nursing Research and Education, City of Hope Medical Center, 1500 East Duarte Rd Duarte, Los Angeles, CA 91010, USA e-mail: [email protected] G. Uman Vital Research, LLC, Los Angeles, CA, USA
the nation. Researchers were able to identify survivorship care programs and activities, as well as the barriers to developing these programs. This presented opportunities to discuss possible interventions to improve follow-up care and survivors’ quality of life. Keywords Cancer survivors . Goal-directed care . Nursing education . Self-reported practice changes . Integration of care
Introduction Cancer survivors are increasing annually, with an expected 13.7 million Americans alive today, who have a history of cancer [1]. This population ranges from people who will be cancer-free for the rest of their lives, to those living with cancer continuously without a disease-free period [1]. Health care for this group includes treatment for patients with active disease, as well as management of long-term and late effects for those who are cancer-free. While a cancer patient may be considered a survivor from the time of diagnosis on [2], cancer survivorship health care has concentrated on patients who have finished active treatment [3]. The health care delivery system must change, in order to provide follow-up care for cancer survivors, whose long-term treatment effects include physical effects (e.g., lymphedema), psychological concerns (e.g., fear of recurrence), social changes (e.g., loss of job), and spiritual challenges (e.g., meaning of life posttreatment) [4–6]. Because this population’s needs span a broad spectrum, survivorship care is frequently shared between the oncology and primary care setting [3]. Changes in our health care settings and promoting a shared care model are critical to the successful integration and delivery of survivorship care [7]. Institution and setting changes are not easy; in fact, they can take years to complete [8]. The starting point for change,
J Cancer Surviv
however, can be at least one or a small group of professionals from an institution learning what is needed for quality survivorship care—and that begins with education [9]. This article describes the content and evaluation of a national program on cancer survivorship care for health care providers and administrators. As Ferris et al. [10] indicate, knowledge alone is insufficient to produce change. The acquisition of skills necessary to facilitate institutional change is critical. Such skill development generally requires mentoring or individual support, in order for implementation to occur. This article addresses these concerns. Goal analysis will be discussed in this presentation and will include changes that have occurred in survivorship care across the nation. Course description The National Cancer Institute funded this project, allowing for four annual multidisciplinary courses on improving quality of care for cancer survivors. The details of this course content, while published previously, will be summarized here [11]. A two and a half-day course was held annually from 2006 to 2009. The curriculum was built around the City of HopeCancer Survivors’ Quality of Life Model, covering the four dimensions of physical, psychological, social, and spiritual well-being [12]. Content included the components of survivorship care as described in the Institute of Medicine Report, From cancer patient to cancer survivor: lost in transition [3]. These components include communication, prevention/detection, surveillance, and interventions [3]. A condensed agenda for the course illustrates the curriculum content and expert faculty who taught the courses (Fig. 1). Teaching methods Fig. 1 Survivorship education for quality cancer care agenda components and faculty
were based on adult learning principles and involved lectures, discussions, small group sessions, videos, resources, and refinement of individual goals for postcourse implementation [13]. Using a mixed methods approach, qualitative and quantitative data were collected at baseline, 6, 12, and 18 months postcourse. Participants were competitively selected from cancer settings across the country. Each setting submitted a team of two professionals, with the first member being a physician, nurse, administrator, or social worker, defined as Tier 1, and the second could be any other staff member involved in or targeted for involvement in survivorship care, defined as Tier 2. Applications required applicant statements on his or her interest in survivorship care, identification of past involvement in survivorship care, letters of support from an immediate supervisor and an administrator, and three goals aimed at creating and/or improving survivorship care in their health care setting after course completion. Evaluation methods Application and questionnaires Team and setting demographics and characteristics were identified from the applications of accepted participants. Title and professional background as well as type of setting, size, and ethnicity of the population served and baseline support services provided were reported for all team members. Following course acceptance, participants submitted a setting survey and an institutional assessment as baseline data. The setting survey focused on the staff and administration and their comfort and commitment to survivorship care and was Survivorship Education for Quality Cancer Care Agenda Components and Faculty
Topic
Faculty Member
Cancer Survivorship Issues and Trends
Betty Ferrell, PhD, RN
Living Beyond Cancer: Making Survivorship Part of the Continuum of Care
Mary McCabe, MA,RN
Health-related Outcomes After Pediatric Cancer: Price of Cure
Smita Bhatia, MD
Survivorship Issues for Adolescents and Young Adults
Brad Zebrack, PhD, MSW, MPH
State of the Science: Physical Well Being and Survivorship
Patricia Ganz, MD
Introduction to Goal Refinement – Small Group Activity
Denice Economou, MN,RN
Adult Cancer Survivorship Program Development – A LIVESTRONGTM
Linda A. Jacobs PhD, RN
Survivorship Center of Excellence, The Living Well After Cancer Program State of the Science: Psychological Well Being and Survivorship
Paul Jacobsen, PhD
National Coalition for Cancer Survivorship and the Survivorship Movement:
Susan Leigh, BSN,RN
Historical and Current Perspectives A Model of Excellence in Community Cancer Support
Vicki Kennedy, LCSW
Starting a Survivorship Clinic
Wendy Landier, PhD ,RN
A Survivor’s Perspective
Michael Feuerstein, PhD, MPH
State of the Science: Social Well Being and Survivorship
Diane Blum, MSW
NCI: The Office of Cancer Survivorship: Research Agenda and Findings
Diana Jeffery, PhD
Institutional Change & Support Opportunities for Survivorship Programs
Marcia Grant, PhD, RN
State of the Science: Spirituality Concerns in Survivorship
Shirley Otis-Green, MSW
Final Goal Presentation and Past Program Highlights
Denice Economou, MN,RN
J Cancer Surviv
rated on a 0–10 scale where 0 was not comfortable to 10 equaling extremely comfortable. The institutional assessment focused on seven domains related to survivorship care, these included vision and management, practice standards, psychological and social policies, communication, quality improvement, patient and family education, and community network. Each statement was rated as present or not present to evaluate if change occurred over the follow-up period. These were reevaluated at 6, 12, and 18 months postcourse. The program evaluation was conducted immediately postcourse with an assessment of the course content and faculty. Faculty provided evaluations as well, and course content was revised yearly based on the faculty and participant evaluations. Goal development and analysis Goals, submitted in the course application, were used to evaluate changes that occurred in the participants’ institutions following course completion. These goals were refined during the course, as teams gained a better understanding of what survivorship care entails and as they contemplated their institution’s needs and resources. Goal development was an integrated component of the curriculum. Throughout the course, time was allotted to break into small groups with three to four teams and one faculty member to refine goals based on newly acquired course information. Using the S.M.A.R.T. goal/objective template, teams were taught to develop goals that were specific, measurable, attainable/achievable, relevant, and time-bound [14]. At the end of the course, participants kept a copy of their three refined goals, and a copy was provided to the survivorship staff for postcourse follow-up. Classification of the goals across settings included directed content analysis of the goals, using a priori codes based on the four survivorship care components identified by the Institute of Medicine (IOM) report [3]. Goals focused on coordination of care addressed the need for communication and collaboration between the survivor, the oncologist, and other health care providers. These goals included developing and delivering treatment summaries and survivorship care plans to specific survivor groups (e.g., breast cancer survivors) and their physicians. Prevention and detection goals focused on activities that targeted prevention of recurrence or new cancers and included the healthy living concepts of diet, exercise, tobacco cessation, and sun protection, as well as detection of new cancers. Surveillance goals included health care related to identifying any recurrence or late effects from the cancer or the cancer treatment. Finally, intervention goals identified services that addressed one or more late or long-term effects posttreatment and were organized within the four City of Hope quality of life dimensions (e.g., rehabilitation clinic for lymphedema, counseling for psychological concerns, contact
with a social worker for work-related issues, access to spiritual counseling for any existential concerns). Classification into these four components was done by the study’s principal investigator and the project director, with each coding the goals separately followed by a comparison of results, and resolution of any differences. During goal analysis, two additional codes were created for goals that did not fit the four IOM survivorship care components: (1) a program development goal code such as hiring survivorship staff and finding space for survivorship activities and (2) an education code that included any activity providing for patient, staff, and community education on cancer survivorship care. A goal achievement tool was e-mailed to each participant with their goals identified as 1, 2, and 3. The tool allowed them to document their perceived percent of achievement for each goal, and a narrative space for them to document changes and/or barriers encountered. This occurred prior to each planned follow-up telephone interview. Setting assessments and surveys were also collected prior to that follow-up call. A semi-structured telephone interview was completed by the project director throughout all four courses at 6, 12, and 18 months. Evaluation included the team’s estimate of the percentage of achievement of each goal (defined at
Facilitating survivorship program development for health care providers and administrators Marcia Grant & Denice Economou & Betty Ferrell & Gwen Uman
Received: 22 July 2014 / Accepted: 22 August 2014 # Springer Science+Business Media New York 2014
Abstract Purpose This manuscript will describe institutional changes observed through goal analysis that occurred following a multidisciplinary education project, aimed at preparing health care professionals to meet the needs of the growing numbers of cancer survivors. Method Postcourse evaluations consisted of quantitative questionnaires and follow-up on three goals created by each participating team, during the 3-day educational program. Evaluations were performed 6, 12, and 18 months postcourse for percent of goal achievement. Goals were a priori coded based on the Institute of Medicine’s survivorship care components along with two additional codes related to program development and education. Results Two hundred and four teams participated over the four yearly courses. A total of 51.6 % of goals were related to program development, 21 % to survivorship care interventions, 20.9 % on educational goals, and only 4.7 % related to coordination of care, 1.4 % on surveillance, and 0.4 % related to prevention-focused goals. Quantitative measures postcourse showed significant changes in comfort and effectiveness in survivorship care in the participating institutions. Conclusion During the period 2006–2009, health care institutions focused on developing survivorship care programs and educating staff, in an effort to prepare colleagues to provide and coordinate survivorship care, in cancer settings across the country. Implications for cancer survivors Goal-directed education provided insight into survivorship activities occurring across M. Grant (*) : D. Economou : B. Ferrell Nursing Research and Education, City of Hope Medical Center, 1500 East Duarte Rd Duarte, Los Angeles, CA 91010, USA e-mail: [email protected] G. Uman Vital Research, LLC, Los Angeles, CA, USA
the nation. Researchers were able to identify survivorship care programs and activities, as well as the barriers to developing these programs. This presented opportunities to discuss possible interventions to improve follow-up care and survivors’ quality of life. Keywords Cancer survivors . Goal-directed care . Nursing education . Self-reported practice changes . Integration of care
Introduction Cancer survivors are increasing annually, with an expected 13.7 million Americans alive today, who have a history of cancer [1]. This population ranges from people who will be cancer-free for the rest of their lives, to those living with cancer continuously without a disease-free period [1]. Health care for this group includes treatment for patients with active disease, as well as management of long-term and late effects for those who are cancer-free. While a cancer patient may be considered a survivor from the time of diagnosis on [2], cancer survivorship health care has concentrated on patients who have finished active treatment [3]. The health care delivery system must change, in order to provide follow-up care for cancer survivors, whose long-term treatment effects include physical effects (e.g., lymphedema), psychological concerns (e.g., fear of recurrence), social changes (e.g., loss of job), and spiritual challenges (e.g., meaning of life posttreatment) [4–6]. Because this population’s needs span a broad spectrum, survivorship care is frequently shared between the oncology and primary care setting [3]. Changes in our health care settings and promoting a shared care model are critical to the successful integration and delivery of survivorship care [7]. Institution and setting changes are not easy; in fact, they can take years to complete [8]. The starting point for change,
J Cancer Surviv
however, can be at least one or a small group of professionals from an institution learning what is needed for quality survivorship care—and that begins with education [9]. This article describes the content and evaluation of a national program on cancer survivorship care for health care providers and administrators. As Ferris et al. [10] indicate, knowledge alone is insufficient to produce change. The acquisition of skills necessary to facilitate institutional change is critical. Such skill development generally requires mentoring or individual support, in order for implementation to occur. This article addresses these concerns. Goal analysis will be discussed in this presentation and will include changes that have occurred in survivorship care across the nation. Course description The National Cancer Institute funded this project, allowing for four annual multidisciplinary courses on improving quality of care for cancer survivors. The details of this course content, while published previously, will be summarized here [11]. A two and a half-day course was held annually from 2006 to 2009. The curriculum was built around the City of HopeCancer Survivors’ Quality of Life Model, covering the four dimensions of physical, psychological, social, and spiritual well-being [12]. Content included the components of survivorship care as described in the Institute of Medicine Report, From cancer patient to cancer survivor: lost in transition [3]. These components include communication, prevention/detection, surveillance, and interventions [3]. A condensed agenda for the course illustrates the curriculum content and expert faculty who taught the courses (Fig. 1). Teaching methods Fig. 1 Survivorship education for quality cancer care agenda components and faculty
were based on adult learning principles and involved lectures, discussions, small group sessions, videos, resources, and refinement of individual goals for postcourse implementation [13]. Using a mixed methods approach, qualitative and quantitative data were collected at baseline, 6, 12, and 18 months postcourse. Participants were competitively selected from cancer settings across the country. Each setting submitted a team of two professionals, with the first member being a physician, nurse, administrator, or social worker, defined as Tier 1, and the second could be any other staff member involved in or targeted for involvement in survivorship care, defined as Tier 2. Applications required applicant statements on his or her interest in survivorship care, identification of past involvement in survivorship care, letters of support from an immediate supervisor and an administrator, and three goals aimed at creating and/or improving survivorship care in their health care setting after course completion. Evaluation methods Application and questionnaires Team and setting demographics and characteristics were identified from the applications of accepted participants. Title and professional background as well as type of setting, size, and ethnicity of the population served and baseline support services provided were reported for all team members. Following course acceptance, participants submitted a setting survey and an institutional assessment as baseline data. The setting survey focused on the staff and administration and their comfort and commitment to survivorship care and was Survivorship Education for Quality Cancer Care Agenda Components and Faculty
Topic
Faculty Member
Cancer Survivorship Issues and Trends
Betty Ferrell, PhD, RN
Living Beyond Cancer: Making Survivorship Part of the Continuum of Care
Mary McCabe, MA,RN
Health-related Outcomes After Pediatric Cancer: Price of Cure
Smita Bhatia, MD
Survivorship Issues for Adolescents and Young Adults
Brad Zebrack, PhD, MSW, MPH
State of the Science: Physical Well Being and Survivorship
Patricia Ganz, MD
Introduction to Goal Refinement – Small Group Activity
Denice Economou, MN,RN
Adult Cancer Survivorship Program Development – A LIVESTRONGTM
Linda A. Jacobs PhD, RN
Survivorship Center of Excellence, The Living Well After Cancer Program State of the Science: Psychological Well Being and Survivorship
Paul Jacobsen, PhD
National Coalition for Cancer Survivorship and the Survivorship Movement:
Susan Leigh, BSN,RN
Historical and Current Perspectives A Model of Excellence in Community Cancer Support
Vicki Kennedy, LCSW
Starting a Survivorship Clinic
Wendy Landier, PhD ,RN
A Survivor’s Perspective
Michael Feuerstein, PhD, MPH
State of the Science: Social Well Being and Survivorship
Diane Blum, MSW
NCI: The Office of Cancer Survivorship: Research Agenda and Findings
Diana Jeffery, PhD
Institutional Change & Support Opportunities for Survivorship Programs
Marcia Grant, PhD, RN
State of the Science: Spirituality Concerns in Survivorship
Shirley Otis-Green, MSW
Final Goal Presentation and Past Program Highlights
Denice Economou, MN,RN
J Cancer Surviv
rated on a 0–10 scale where 0 was not comfortable to 10 equaling extremely comfortable. The institutional assessment focused on seven domains related to survivorship care, these included vision and management, practice standards, psychological and social policies, communication, quality improvement, patient and family education, and community network. Each statement was rated as present or not present to evaluate if change occurred over the follow-up period. These were reevaluated at 6, 12, and 18 months postcourse. The program evaluation was conducted immediately postcourse with an assessment of the course content and faculty. Faculty provided evaluations as well, and course content was revised yearly based on the faculty and participant evaluations. Goal development and analysis Goals, submitted in the course application, were used to evaluate changes that occurred in the participants’ institutions following course completion. These goals were refined during the course, as teams gained a better understanding of what survivorship care entails and as they contemplated their institution’s needs and resources. Goal development was an integrated component of the curriculum. Throughout the course, time was allotted to break into small groups with three to four teams and one faculty member to refine goals based on newly acquired course information. Using the S.M.A.R.T. goal/objective template, teams were taught to develop goals that were specific, measurable, attainable/achievable, relevant, and time-bound [14]. At the end of the course, participants kept a copy of their three refined goals, and a copy was provided to the survivorship staff for postcourse follow-up. Classification of the goals across settings included directed content analysis of the goals, using a priori codes based on the four survivorship care components identified by the Institute of Medicine (IOM) report [3]. Goals focused on coordination of care addressed the need for communication and collaboration between the survivor, the oncologist, and other health care providers. These goals included developing and delivering treatment summaries and survivorship care plans to specific survivor groups (e.g., breast cancer survivors) and their physicians. Prevention and detection goals focused on activities that targeted prevention of recurrence or new cancers and included the healthy living concepts of diet, exercise, tobacco cessation, and sun protection, as well as detection of new cancers. Surveillance goals included health care related to identifying any recurrence or late effects from the cancer or the cancer treatment. Finally, intervention goals identified services that addressed one or more late or long-term effects posttreatment and were organized within the four City of Hope quality of life dimensions (e.g., rehabilitation clinic for lymphedema, counseling for psychological concerns, contact
with a social worker for work-related issues, access to spiritual counseling for any existential concerns). Classification into these four components was done by the study’s principal investigator and the project director, with each coding the goals separately followed by a comparison of results, and resolution of any differences. During goal analysis, two additional codes were created for goals that did not fit the four IOM survivorship care components: (1) a program development goal code such as hiring survivorship staff and finding space for survivorship activities and (2) an education code that included any activity providing for patient, staff, and community education on cancer survivorship care. A goal achievement tool was e-mailed to each participant with their goals identified as 1, 2, and 3. The tool allowed them to document their perceived percent of achievement for each goal, and a narrative space for them to document changes and/or barriers encountered. This occurred prior to each planned follow-up telephone interview. Setting assessments and surveys were also collected prior to that follow-up call. A semi-structured telephone interview was completed by the project director throughout all four courses at 6, 12, and 18 months. Evaluation included the team’s estimate of the percentage of achievement of each goal (defined at
